Ending my Actemra next month

[GCAYme]

Ive been on the weekly Actemra syringe injections for two years. Diagnosed GCA from a biopsy in March 2022. Absolutely no side effects ever. I’m being taken off at the end of next month cold turkey. A little apprehensive (ie:scared) that a relapse may occur. Has anybody followed that same path or should I insist on tapering to every other week for a few months?

[SheffieldJane]

I didn’t experience ill effects when I stopped Actemra. I was more concerned about the painful Diverticulitis that had developed during its use. Unfortunately, over a year later I still have to be careful with my diet and take Lansoprazole before Pred and Buscopan when my lower abdomen hurts. There were no symptoms of withdrawal from Actemra. I am now solely on Pred for my PMR/LVV/GCA (5 mgs).

[LemonZest11]

Hi there GCAYme, I don’t think there is an issue with stopping Actemra suddenly, provided you are sure that there is no disease activity. Are you still on pred? If it were me, I’d ask to taper the injections to give you the chance to see how you feel. I’m not an expert but I too am on the Actemra jabs and I have managed to stretch them out to 4 weekly. I’m still not brave enough to stop completely, but you may be. Thinking of you 🤞

[PMRpro Ambassador]

There are likely to be no side effects from just stopping it - unless the GCA is still active and it builds up again. But you have to try to find out. There has been a study recently in the UK to justify Actemra being available for much longer than the 1 year that applies currently and they were able to show quite a few relapse once it is removed.

[GCAYme]

Thank you to all of you for caring replies. My Doctor said similar information but it feels much more reassuring to hear from you all. I have not been on Prednisone since Nov of 2022 so I’m taking the leap without a parachute. I like PMRPro’s comment. I have to find out. I’ll be looking for similar GCA symptoms as well as PMR. I’ll have blood work and Chest MRA 4 months after my last dose. Thank you again.

[jarn in reply to GCAYme]

I was on TCZ for 2yrs. (after the first year, stopped the Prednisone) After 18mos, started injections every 2wks, then just stopped because I noticed little skin blisters/lesions on my legs and felt it was likely from the drug. No pbms with stopping, but my CRP etc started increasing. On good advice from Pro and Dorset Lady, consulted my neuro opthamologist who advised to keep on with the Prednisone at 3mg strength, daily. He felt strongly that such a low dose is not harmful at all and could be taken for a lifetime. Of course my Rheumy was not as keen and still wanted me to get lower still. Listened to the Opthamologist and now doing 2.5mg daily. Keeps me upright and pain free. Tried dropping lower, but fatigue and shoulder returned. So, yes, no problem with stopping TCZ but don't be surprised if the inflammation is still creeping around. Good Luck

[GCAYme in reply to jarn]

Thank you. CRP was always low for me, so I will be looking more for symptoms. I have a reserve of Prednisone just in case.

[HeaUnlocked]

I had both PMR and GCA .

My rheumy had we wean off Actemra pretty slowly. He said I could have gone off it in a year but that he said that taking it for a longer period helps reduce the risk of recurrance.

I was on Actemra for a total of about 1 year 9 months. Started with weekly self administered injections of Actemra for about a year, then tapered off by going every other week,then every third week, finally once a month.

Had no side effects from the Actemra ( unlike predisone). Have been off predisone for 3 yrs and off Actemra for about 2yrs with no recurrances. Fingers crossed for the future.

[GCAYme in reply to HeaUnlocked]

Thank you. Fingers crossed for sure. I hope to day the same in 2 years.